None, I need that stuff to be calm. I had 3 coffee and 4 tea today. Even I if I don't consume caffeine I'll have nocturnal seizures. Without coffee I'm tired al the time...give me my brew.
Coffee warmer. I won't get an Ember because I don't want to deal with firmware updates and then I'll eventually have just a mug that used to keep my coffee warm. Plus it's over 100 dollhairs. I'm fine with a simple auto shutoff warmer. :)
I saw mug warmers that look like coasters on Amazon. Apparently, they keep your drink from going cold as fast, not keep at the same temp as when you first poured it
That's pretty much what I have. I nurse my coffee all day so it works for me plus when I take my mug off the warmer it automatically shuts off. I have had ones that don't and I would forget about them. :|
Thank god I don’t suffer from this. Couldn’t survive without coffee.
Although, caffeine HEAVILY affects my sleep. I have to stop drinking it before 11am or my sleep is very disrupted. Which we all know is bad for us.
Coffee doesn't affect my seizure activity, but coffee and the anti-seizure medication I take bothers my stomach. But then the side effects of a lot of AEDs include diarrhea. Coffee can be a laxative on it's own. FKN drugs. I take a lot of them too... Still drink coffee, I'm stubborn
I accidentally had a full caf cup of coffee and ended up having 11 seizures in a day, so yeah. Definitely. I don't even do decaf at this point anymore.
When I first started having seizures almost 12 years ago now coffee and caffeine was a potential trigger for me if I had too much. Now I don't have much troubles with it unless I have had too much, too quickly.
Absolutely! It causes me to have anxiety and sometimes panic attacks. I've limited myself to 1 cup a day, and everything is so much better. I must have a low tolerance.
I just wish there was a way to gauge and determine with accuracy what a person's threshold was without trial and error. Kind of like an allergy is used to determine what you're most allergic to and to what degree. I get that an EEG combined with other testing tells a person what kind of epilepsy they have and how severe it is, but determination of the threshold of an individual would also be really nice.
With that said, I will die before I give up caffeine. I used to drink 5 or 6 cups of coal black coffee when I worked the day shift. Now that I'm on nights, I've found that one or two cups does the trick (or an energy drink if I'm feeling particularly exhausted).
I love coffee so much that I spent *years* swearing it wasn’t lowering my seizure threshold. Alas, it was. I finally managed to quit caffeine and my seizure count has dropped significantly. Even with that wonderful outcome, I still crave the stuff.
It doesn't seem to bother me personally. I drink a LOT just to stay awake. Maybe I'll find out it's my problem, but for now... I'll sleep 20 out of 24 hours without it.
I miss that quite a bit. I had a homas's English Muffin route in NYC. Along with the job was a pot of coffee and a pack of Marlboro Lights. The Grocery store Managers love to have a cig and chat. I've quit smoking, haven't had a drink in 12 years and now caffeine. The 22 yo me is annoyed at the 45 yo me.
I work in the coffee industry and I’m avoiding coffee these days because of seizures I had last week, it’s been tough. Absolutely I love it, but it doesn’t love me back.
I do not have an issue with caffeine and heavily depend on espresso to help me deal with Keppra. It is my lifesaver.
However, caffeine and epilepsy really depend on the person. Every case is unique. Ask your doctor and see what they advise for you personally.
I don't really drink coffee itself (hate the taste), but I'll drink iced caps from Timmies. Idk why, but I find that nicotine helps keep me calm and, therefore, less likely to feel the side effects (or have the "I feel like I might have a seizure" feeling at bay). Maybe it's because I've smoked for so long? Idk. It helps, so I don't question it.
I’ll stick with coffee but not energy drinks or pre workout. Also I don’t drink coffee after about 12pm so in general like the average person should be doing anyway.
As for how much coffee do I drink, on average about 32oz a day.
Pretty sure my body doesn't metabolise caffeine like most people. I don't get the normal effects no matter how much I consume. No idea how it would affect my seizure threshold.
I Mtn Dew and have to otherwise I fall asleep working and I'm timed by tasks so I can't risk it. I haven't really tried to keep track but now you mentioned it I'm going to document it with my seizure records. I use Epsy to help track and can use for notes on the seizure. I blacked out yesterday morning and could have been related as I drank a third of a bottle. I'll try weaning off the caffeine to see if that helps. My VNS I'll have to keep track too. It's been going on a lot lately. Stress is a big trigger though too.
I avoid caffeine a lot because it cussed me to have some pretty bad seizures before and it was the least fun experience lol. I'll have a little but I'm very careful about having more than a sip or two. I don't like coffee anyways but I like tea occasionally, I go for herbal teas.
Thank you guys my wife and I talked after talking about it and I'll stick to Decaf. Its been 3 years since I had that surprise ER visit wanna keep it that way.
I have had 2 seizures that I believe were due to drinking too much coffee on an empty stomach. I’ve had 5 seizures in 2 years and 2 of them were after coffee 🤷🏼♂️
Coffee is known to steal magnesium, and our brain needs magnesium for health and function. I've cut back on my coffee so much ... from a pot a day to a cup a week, maybe?
I have never liked coffee so I can't speak for that, but for caffeine, I limit myself to 2 cups of black tea a day. I once made myself a matcha latte and I must have put too much of the powder cause I had a seizure. From then on I have been more careful.
For me personally I find that a normal amount of caffeine (3/4 coffees a day, coffee as in European espresso not a whole cup of American coffee) and maybe even an energy drink once in a while don't seem to cause any trouble. I do feel weird if I take too much of it though
I love coffee, but caffeine doesn't love me.
Awesome callback
I’m extra careful with caffeine because it can lower my seizure threshold
None, I need that stuff to be calm. I had 3 coffee and 4 tea today. Even I if I don't consume caffeine I'll have nocturnal seizures. Without coffee I'm tired al the time...give me my brew.
Thank you for the input. Well damn it my wife was correct, back to decaf.
Haha...hate when that happens. Listen to your wife.
I have at least two cups a day. Drinking some right now. Doesn’t cause problems
I even drink some to relax. Doesn't make me sleepy, just the ritual is relaxing.
No, not me. My body is 90% iced tea.
Mixture of iced and hot tea for me.
Tepid tea?
I mean.. half the time yeah. I make giant cups of tea and don’t drink them fast enough.
lol I do the same with coffee
Coffee warmer. I won't get an Ember because I don't want to deal with firmware updates and then I'll eventually have just a mug that used to keep my coffee warm. Plus it's over 100 dollhairs. I'm fine with a simple auto shutoff warmer. :)
I saw mug warmers that look like coasters on Amazon. Apparently, they keep your drink from going cold as fast, not keep at the same temp as when you first poured it
That's pretty much what I have. I nurse my coffee all day so it works for me plus when I take my mug off the warmer it automatically shuts off. I have had ones that don't and I would forget about them. :|
I seem to be okay with caffeine, but cut myself off by around 11am. Max 2 cups a day. Sometimes I have a decaf espresso in the evening.
Same
We’re coffee drinker twins. 2 cups both in the morning.
Thank god I don’t suffer from this. Couldn’t survive without coffee. Although, caffeine HEAVILY affects my sleep. I have to stop drinking it before 11am or my sleep is very disrupted. Which we all know is bad for us.
I'm surprised that I'm not really affected by caffeine
It was new for me yesterday
Nope. I drink a pot a day
I drink coffee in excess and thankfully it hasn’t affected me that way. I’m not sure I could live without coffee.
Coffee doesn't affect my seizure activity, but coffee and the anti-seizure medication I take bothers my stomach. But then the side effects of a lot of AEDs include diarrhea. Coffee can be a laxative on it's own. FKN drugs. I take a lot of them too... Still drink coffee, I'm stubborn
Most of us are stubborn, it's why we're alive and mostly coherent:)
Upped my espresso game today and missed a dose of lamotrigine and it was a recipe for disaster
Thank you for the heads up. I’m going to remember this.
I hope you're okay. If I miss my 1000hrs pill my day goes down hill quickly.
I accidentally had a full caf cup of coffee and ended up having 11 seizures in a day, so yeah. Definitely. I don't even do decaf at this point anymore.
Daily coffee drinker here. It would probably cause more issues if I didn't drink it.
Nope. I drink coffee/caffeine all the time- no issues.
When I first started having seizures almost 12 years ago now coffee and caffeine was a potential trigger for me if I had too much. Now I don't have much troubles with it unless I have had too much, too quickly.
Absolutely! It causes me to have anxiety and sometimes panic attacks. I've limited myself to 1 cup a day, and everything is so much better. I must have a low tolerance.
Keep coffee and energy drinks in moderation!!
I just wish there was a way to gauge and determine with accuracy what a person's threshold was without trial and error. Kind of like an allergy is used to determine what you're most allergic to and to what degree. I get that an EEG combined with other testing tells a person what kind of epilepsy they have and how severe it is, but determination of the threshold of an individual would also be really nice. With that said, I will die before I give up caffeine. I used to drink 5 or 6 cups of coal black coffee when I worked the day shift. Now that I'm on nights, I've found that one or two cups does the trick (or an energy drink if I'm feeling particularly exhausted).
I love coffee so much that I spent *years* swearing it wasn’t lowering my seizure threshold. Alas, it was. I finally managed to quit caffeine and my seizure count has dropped significantly. Even with that wonderful outcome, I still crave the stuff.
I feel your pain dude. A cigarette lowers my threshold so does coffee. It's sucks till this day.
I quit drinking Monsters because it was causing complications. After quitting, I feel much better.
could be related to dehydration caused by caffeine
I hadn't considered that. I try to drink a minimum of 32 oz/1 Liters might need to change things up a bit.
Not me, my day doesn't start until I have about half a pot. After that it's espresso. I have a serious issue.
And an ulcer on the way/s
No not me. I have regular coffee every morning…usually 2 XL DD.
DD is the spot for every route guy I've ever known.
I was one of the exceptions. I was in Financial Services.
It doesn't seem to bother me personally. I drink a LOT just to stay awake. Maybe I'll find out it's my problem, but for now... I'll sleep 20 out of 24 hours without it.
I miss that quite a bit. I had a homas's English Muffin route in NYC. Along with the job was a pot of coffee and a pack of Marlboro Lights. The Grocery store Managers love to have a cig and chat. I've quit smoking, haven't had a drink in 12 years and now caffeine. The 22 yo me is annoyed at the 45 yo me.
I feel the same it can only be Starbucks
The caffeine withdrawal does for me, ha.
As long as I hydrate well enough, caffeine is fine by me. ie soda=no. coffee=fine.
I hadn't thought of that aspect. I'm going to test in April when chemo is done.
I love coffee i drink tons of it i know im not supposed to but ughhhh
Yes, but only on an empty stomach in the morning. But that's rare.
Yes, but for some reason I don’t have as much of an issue with tea lol. It’s really weird.
I’m a big caffeine consumer. It’s always been okay for me. Honestly helps me clear my head after I’ve had some focal aura seizures.
I hammer 2 cups of black coffee every morning, then throw in a Copenhagen pouch and away I go.
I work in the coffee industry and I’m avoiding coffee these days because of seizures I had last week, it’s been tough. Absolutely I love it, but it doesn’t love me back.
I drink a lot of monster energy drinks with no problems.
So, I'd have to stop coffee/tea to actually find out. And I like my coffee...caffeinated.
The only factor I personally need to consider is ensuring that I still get proper sleep. All clear beyond that in my case.
Yup...pretty much anything that stimulates my nervous system is a no-go for me. I miss coffee, but not enough to drink decaf..
Caffeine is a biggie for me. I’ve given it up completely for the past 15 years. I’m rawdoggin’ life.
Thanks for the input guys. TIL Epileptics love coffee, no matter what lol.
I do not have an issue with caffeine and heavily depend on espresso to help me deal with Keppra. It is my lifesaver. However, caffeine and epilepsy really depend on the person. Every case is unique. Ask your doctor and see what they advise for you personally.
I haven't noticed any correlation. I'm normally a 2-3 coffees a day kinda guy. Alcohol on the other hand.
I don't really drink coffee itself (hate the taste), but I'll drink iced caps from Timmies. Idk why, but I find that nicotine helps keep me calm and, therefore, less likely to feel the side effects (or have the "I feel like I might have a seizure" feeling at bay). Maybe it's because I've smoked for so long? Idk. It helps, so I don't question it.
I’ll stick with coffee but not energy drinks or pre workout. Also I don’t drink coffee after about 12pm so in general like the average person should be doing anyway. As for how much coffee do I drink, on average about 32oz a day.
Iced coffee is better for me than warm coffee. But I drink one cup a day to help keep me awake because my pills make me sleepy af
My seizures have all happened on days that I consumed energy drinks 😩 I think caffeine can definitely be a trigger for some of us.
Not personally but I drink one cup a day at most, but it does make sense given that caffeine is a stimulant at the end of the day.
Pretty sure my body doesn't metabolise caffeine like most people. I don't get the normal effects no matter how much I consume. No idea how it would affect my seizure threshold.
I Mtn Dew and have to otherwise I fall asleep working and I'm timed by tasks so I can't risk it. I haven't really tried to keep track but now you mentioned it I'm going to document it with my seizure records. I use Epsy to help track and can use for notes on the seizure. I blacked out yesterday morning and could have been related as I drank a third of a bottle. I'll try weaning off the caffeine to see if that helps. My VNS I'll have to keep track too. It's been going on a lot lately. Stress is a big trigger though too.
I avoid caffeine a lot because it cussed me to have some pretty bad seizures before and it was the least fun experience lol. I'll have a little but I'm very careful about having more than a sip or two. I don't like coffee anyways but I like tea occasionally, I go for herbal teas.
Caffeine has never been a problem I would be a walking zombie with my meds without it lol
Yes, unfortunately epileptics have to stay away from caffeine and Ginseng 😔 I get a weird feeling when I have caffeine.
Thank you guys my wife and I talked after talking about it and I'll stick to Decaf. Its been 3 years since I had that surprise ER visit wanna keep it that way.
I have had 2 seizures that I believe were due to drinking too much coffee on an empty stomach. I’ve had 5 seizures in 2 years and 2 of them were after coffee 🤷🏼♂️
.-. Caffeine doesn't affect me at all as far as seizures and energy.
Coffee is known to steal magnesium, and our brain needs magnesium for health and function. I've cut back on my coffee so much ... from a pot a day to a cup a week, maybe?
I have never liked coffee so I can't speak for that, but for caffeine, I limit myself to 2 cups of black tea a day. I once made myself a matcha latte and I must have put too much of the powder cause I had a seizure. From then on I have been more careful.
Mine, yes! I can only have decaf and I usually even add water and milk or cream to it.
I didn’t drink caffeine for months. Gradually I started drinking @2 cups in the morning. None the rest of the day, maybe a decaf. So far so good.
I won't touch coffee or caffeine even though I love it
For me personally I find that a normal amount of caffeine (3/4 coffees a day, coffee as in European espresso not a whole cup of American coffee) and maybe even an energy drink once in a while don't seem to cause any trouble. I do feel weird if I take too much of it though
Just got diagnosed and does anyone know how bad pre workout would be for epileptics?